Milea Timbergen

257 such as pain, fatigue and loss of muscle strength also received high priority scores of 2.4, 2.3 and 2.3 respectively. Although these items are covered by the EORTC QLQ-C30 questionnaire, the results of this study highlight the importance of physical symptoms, caused by the tumour or as a side effect of treatment, and their impact on HRQoL. Patients identified several important issues that were not covered by other questionnaires. These could be considered in the development of a future DTF-specific HRQoL-tool. In a rare and heterogeneous disease, such as DTF, measuring the impact of the disease for patients can be challenging. This can be due to the variable disease presentation, course and response to treatment, and due to the knowledge gap of the natural history of the disease 20 . Moreover, the limited number of responses challenges research in this field. Our cohort may not be representative of the entire DTF population as the majority of patients in this cohort had an intra-abdominal tumour and many patients received one or multiple active forms of treatment. In addition to physical, emotional and psychological problems, patients with DTF might also experience social isolation due to lack of peers with the same condition 20 . This was reflected in the current study by a relatively high score for the issue “not knowing peers with the same disease”. Furthermore, lack of information was identified as a relevant topic as the following issues “DTF is unknown among most doctors”, and “lack of information received about DTF”, received M-scores of 2.6, and 1.8 respectively. HCPs may treat a limited number of patients with this rare disease, therefore patients may receive an incorrect diagnosis or delay in diagnosis due to lack of experience in recognizing and treating the disease 20 . The comparison in relevance scores between patients and HCPs show that HCPs scored significantly higher on a large number of issues, suggesting that they recognize and acknowledge problems that faced by this patients group. The issue “reaching a definite diagnosis is time consuming” received an M-score of 2.3, showing that this is a relevant problem for this patient group. Whilst the future DTF-specific HRQoL tool will be available upon diagnosis, it is important for HCPs to consider that patients may have encountered difficulties reaching the correct diagnosis and so provision of clear information and support at this time is essential. Accessing specialists with knowledge of DTF can be challenging, as they may be located in regional specialist centres. This can result in patients receiving multiple treatment recommendations before seeing a specialist. 9